Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndromehttp://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Didn't read it

Not sure I fully understand it

No

I see, so muscles recruited for other tasks have become in some way inoperable, or deconditioned?

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Wrong. I can use the muscles that work at a given moment for anything I want but I prefer to use them to stay alive. Other things have to wait.

It is not just skeleton muscles. Smooth muscles are affected too.

I meant 'why do you feel this is the case' as in 'what do you put this down to'?

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If you had it you would not ask. Failing muscles is not something one can miss.

I think I understand - are you saying you have a problem with motor coordination/proprioception (sense of the relative position of neighbouring parts of the body and strength of effort being employed in movement)?

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No, they do not work.

I figured out what causes it. It was a hell of a job but recently I found the last missing piece.

I always said it was that infection but there still is no test for it.

I posted enough information for people with the necessary basic knowlegde to connect the dots.

I'm not your "dear". And no, we don't have our "legs". We are sick, and we are disabled. Maybe the disability will go away when the illness is dealt with, but until that happens we are not going to be cured or improved via any form of exercise.

We sure as hell aren't suffering ill effects as the result of avoiding anything.

I agree that it is often counter-productive if the conditions are not right, but I see increases in activity as being correlated with recovery once a patient is in remission, both experientially and theoretically

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Brilliant. Do you think MAYBE the correlation might exist because being in remission makes it possible to do things that weren't doable before?

Here's a hint: most of us aren't in remission yet. And those who are in remission do not need help from a life coach to learn how to stop "avoiding" any cognitive or behavioral problems.

Circulatory abnormalities like OI for one, is compounded by inactivity e.g. it can lead to vascular/leg muscle deconditioning and lower blood volume. Lymphatic circulation is also impacted by inertia and inertia-linked respiratory habits

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Sure thing. So tell me why being more inactive for one to three weeks caused my OI to improve afterward on multiple occasions?

I'm not trying to "fix" anyone dear, merely positing a theory and associated protocol ideas to aid wellness and potentially boost chances of recovery in those open minded enough to entertain these ideas

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There's that patronizing "dear" thing again. And it's very clear that you have your theory which you are heavily pushing on us. And it's also clear that your understanding of ME/CFS is very limited.

I've said this before, to "helpful" people aggressively marketing their various paths to wellness on this forum: stop telling us about ME/CFS and start reading about it. There are thousands of threads on this forum describing the disability, symptoms, emotional issues, and stupid and harmful treatments we have received. If you really want to understand ME/CFS, then start reading.

It'll probably take you a few months. Maybe you'll have something better to offer us when you're done.

Imagine life lived in an urban environment after a road traffic accident involving a pedestrian.. most affected people will, given time, and the right support where necessary, learn to face their fear of automobiles and grasp with ease the concept that so long as they are careful and look both ways/listen, their quality of life will improve when they re-conquer the fear of crossing

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It's telling that in an atempt to justify your protocol for ME/CFS, you are chosing to use an analogy of a mentally traumatic experience and subsequent irrational fears resulting in the expresion of avoidance behaviours, with resolution coming about as a consequence of re-conquering that fear.

those who are in remission do not need help from a life coach to learn how to stop "avoiding" any cognitive or behavioral problems

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What individuals need is subject to their individual health profile, it’s sweet of you to speak up for them but I’m not pushing anything hard here, or selling anything for that matter, so it seems a little.. unnecessarily defensive

For the record, I don’t do life coaching on a professional basis, and although my protocol does hinge on lifestyle management, whenever I approach the protocol with a fellow patient, my role is to provide information/explication, not instruction per sae - they take from it what they will and design a personalised protocol for themselves – I don’t ‘coach’ them in that regard, nor do I (consciously) practice CBT

Sure thing. So tell me why being more inactive for one to three weeks caused my OI to improve afterward on multiple occasions?

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My OI worsens when I am active following treatments that stimulate the SNS. I put that down to SNS-ANS disturbance, leading to enhanced ADH deficiency/Hypoaldosteronism and hence reduced water retention/blood volume. They key, for me, is to get the SNS (consistently) calm, before attempting activity that is SNS stimulative – this, for me, is a very important (perhaps the most important) aspect of PEM

it's very clear that you have your theory which you are heavily pushing on us

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Sorry, in what way I am I pushing it heavily? Because I have defended my position/approach in the face of opposition?

If I am jumped on with terse, emotive comments (in no way constructive/discursive) then naturally I am unlikely to be convinced of associated views contrary, or apparently contrary, to my own, and will simply rebuke such comments as appropriate. If, however, one enters into discussion in the spirit of ideas sharing and gaining greater understanding of collective experiences/perspectives, then I will similarly share in that spirit

It's telling that ... you ... use ... irrational fears ... with resolution coming about as a consequence of re-conquering that fear

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Fear of PEM is entirely rational, and one might argue that a useful side effect of that fear is that it helps maximise wellness to some degree (e.g. conserving energy, minimising orthostatic stress), prior to entering remission

Overcoming certain fears is an important part of rebuilding physical activity as one recovers for some patients, yes. Such fears are only irrational, however, when they are extended to thinking: all forms of activity, at all stages of the illness, in all PWME, must be counter-productive

snowathlete said:
It's telling that ... you ... use ... irrational fears ... with resolution coming about as a consequence of re-conquering that fear

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That's quite a cut down version of my post that you quoted there, which seems like an attempt to avoid my point and turn it into something it wasn't. My post was "It's telling that in an atempt to justify your protocol for ME/CFS, you are chosing to use an analogy of a mentally traumatic experience and subsequent irrational fears resulting in the expresion of avoidance behaviours, with resolution coming about as a consequence of re-conquering that fear." It's not that long so no real need to cut it right down like that.

You still haven't explained why you used a strictly mental trauma example in defending your argument for your protocol in a serious pysiological, neuro-immune disorder??

If you believe that the two illnesses are directly comparable then you're saying the illness is pyscological. If you don't believe that then I'm confused why you would use such a clear analogy of an irrational fear following a mentally traumatic event, to justify a protocol for a serious physiological disease?

I've belonged to support groups for people with ME and CFS for decades in several different countries and I've yet to actually meet one who has an irrational fear of exercise. For the vast majority of people it's the opposite - at the least sign of an increase in their ability to function they do far too much exercise.

When you choose John Wolfe to concentrate on a problem that may occur in maybe one person out of a thousand or ten thousand or a hundred thousand who in the future may be lucky enough to ever get to the point of being able to exercise again you make a mockery of the problems the majority face now and expose your agenda.

It's not a problem worth ever mentioning in any treatment plan. You may as well include treatment for very rare diseases that maybe a patients has somewhere that could be co-factor.

If there is this one unfortunate individual who is scared to exercise but at a level at which they could be doing it, then they can be helped by the thousands of CBT therapists that the NHS has now who can do so little to help the majority.

Any treatment plan needs to be focussed on the other 999999999 who need help desperately ever to get to the point of thinking about exercise again and in the meantime need reminding of what will happen if they over exercise now.

Well it is nice to see that you are trying to help yourself and others. It just slightly enrages me when someone who does not have this disorder claims that positive thinking will cure it. I do not see how anyone could be considered anything but positive by default when stuck in a bed living for years on end unable to function normally and having not slit one's own wrists yet. lol

I used to propose all sorts of theories on this website. Now I simply claim what has worked for me. We all know that there are nervous system imbalances present. Those may be from hormone imbalances/deficiencies in some - or from other causes, possibly genetic - altering the metabolism and production of things like serotonin and other neurotransmitters.

I found out my pituitary basically was unable to produce adequate growth hormone. The implications of going for potentially years with untreated growth hormone deficiency at a somewhat young age relative to when most disease strikes people are really unknown to the medical community.

So it is hard to say what came first - the chicken or the egg. In some cases there is clear cut evidence of a foreign pathogen or toxic exposure which help narrow the cause and cure.

In my body I have chosen not to focus on pathogens. I could chase viruses all day. I have not seen anyone recover solely from antiviral treatments, even when they were shown to have a viral load of something. Though, my story is different than yours and you may not have what I have, in any case, and I'm glad whatever you are doing for yourself is helping.

But I must preface this by saying that to claim that your hypothesis is an answer to every case of M.E. or CFS is a common thread I see that I do not like. I'm not sure if you are claiming this or not but I think that this disease would be a lot better understood now if people and researchers stopped looking for one common cause. So many things can cause it. Therefore the treatment is not going to be the same for everyone. A lot of people's treatment may look completely different from others' treatment.

I more than anyone was hopeful to see even a 10% improvement. But almost anything can do that. We need to not settle for slight improvement. Either you are treated or not. Either you can function at the level you need to survive in this world or you can't. And I'm not discouraging you from writing. What you are doing is great. If anything it is keeping you motivated to survive. I did it too. But to call one thing "The" Hypothesis and insinuate that it is "The" answer to basically what is a set of symptoms that a hundred things is potentially a lie if sold that way.

You've met a bunch of Super-Duper experienced patients that can give you alot of input/feedback.

I would like to add some food for thought. I wonder if it possible to identify groups of patients that respond to similar treatments? Some people do well on abx, some on antivarls, some on methylation, etc.... be good if we could narrow treatments in to groups to predict what kinds of patients respond to what treatments? For instance some do well on glycine and some don't. Why is that? and can it be predicted somehow?

You still haven't explained why you used a strictly mental trauma example in defending your argument for your protocol in a serious pysiological, neuro-immune disorder??

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I used it in the context of your comments re: onespecific aspect of my protocol:

Open mindedness re: smart activity vs. "very damaging experiences involving exercise in ME/CFS". The reason I picked a metaphor relating a negative/damaging experience involving physical injury to subsequent fear of exposure to similar experiences in the future should be fairly self explanatory

If you believe that the two illnesses are directly comparable then you're saying the illness is pyscological

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See above re: specific aspect of protocol e.g. specific aspect of the illness in the sub-set of affected patients

Like all chronic illnesses, the trajectory, and in some instances severity, of ME/CFS is not immune from the influence of psychological factors - although it will be quite clear from my articles that this is only one part of the picture and of limited relevance in many cases, at least in a direct, co-causal sense

For the vast majority of people it's the opposite - at the least sign of an increase in their ability to function they do far too much exercise

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This has been my experience too, both personally and in terms of fellow members of the ME/CFS community I've come into contact with. There are those, however, who have bad experience(s) with PEM and relapses, and react (understandably) strongly to those seeking to impose ill considered/inappropriate (fixed) exercise regimes upon them, and thus form rather rigidly anti-exercise views of the type I've noted (all [extra] activity/exercise, at all stages of illness/recovery, especially those imposed/suggested by others, necessarily harmful), which I do sincerely believe have the potential to prove a hindrance to recovery

When you choose John Wolfe to concentrate on a problem that may occur in maybe one person out of a thousand or ten thousand or a hundred thousand who in the future may be lucky enough to ever get to the point of being able to exercise again you make a mockery of the problems the majority face now and expose your agenda

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It's conceivable that there will be a proportion of the severely affected group who may never be in a position to find the targets for treatment emerging from my research/embodied in my protocol helpful

However, I am extremely confident that there are many aspects that the vast majority of the broader body of PWME would see a benefit from when approached sensibly. Were that not the case I would focus both articles more deliberately/obviously at the 'Mild ME/CFS'. Instead I believe it's important to share the information/insights in a non exclusive way and allow people to make up their own minds as to the appropriateness/efficacy of the targets for them personally

Is this your personal view or is it (also) the view of any particular authors/researchers? If there's a literature behind the notion of all additional activity/exertion as necessarily being bad I would like to look into it

they can be helped by the thousands of CBT therapists that the NHS has now who can do so little to help the majority

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Fair point but additional to this the NHS has a responsibility to ensure that they don't just help such patients onto the right track in attitudinal terms but that the patient then goes away and pursues smart activity (appropriately tailored, monitored, and incremented, so as to be both beneficial and sustainable)

Any treatment plan needs to be focussed on the other 999999999 who need help desperately ever to get to the point of thinking about exercise again and in the meantime need reminding of what will happen if they over exercise now

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As above:

"It is important to bear in mind that if you try to push yourself before your health and energy levels are stable you may do more harm than good however"

You'll also note the protocol doesn't advocate what most would label 'exercise' in the early stages, and leaves it up to the individual/their specialist advisors to determine what would be most appropriate (in light of the various bits of advice re: pacing and working out sensible limits)

John one of the problems I have is with incremental exercise, the fluctuations of the illness I have means that I cannot plan to increase this however slowly - some days I wake and feel so bad its an effort to even get up, FM pains worse, I listen to my body, I move more slowly, take my time, always pushing to do a little more than I feel though. I never do nothing on these days although I am tempted to - I know the importance of actually moving the body.
Other days I can do more, I walk about as much as I can - getting up and down constantly. There is no progression in my ability to exercise however, and I remain as sick as ever.

The approach I take personally is to test for whatever seems like it could feasibly be an issue and examine/address all sources of systemic stress at a basic level (as per the checklist/protocol) so as to ensure I've got as many bases covered as possible. This may seem daunting/exhausting for PWME, particularly the more seriously affected, but once you have a routine/reminders in place it's not particularly onerous in terms of time/mental energy

Indeed. Chronic infection is often at the heart of (if not exactly the core process, in my estimation, concerning) ME/CFS. Viral infections are typically closest to the core in my view, although acute/secondary chronic bacterial infection are also associated with chronicity e.g. autoimmune inflammation arising from gastro-intestinal disorders

Methylation cycle type issues are associated with onset/relapses in most PWME, beyond B12 utilisation difficulties/free radical activity it may represent a critical pathway to mitochondrial failure for example, which would appear, in turn, to be something of a biomarker for ME/CFS

All of this appears however, to be secondary to sensitisation arising in relation to restricted neurodynamic and (associated) core hyper-inflammatory profiles. In other words, treating secondary disorders with abx/antivirals/glutathione/B12 etc is therapeutic on both the level of the target systems and more broadly in terms of reducing systemic stress and hence central sensitisation, however these interventions alone may not prove sufficient to go beyond remission to sustained recovery, unless accompanied by factors that are designed to, or (in many cases) inadvertently, address other factors associated with noxious neurogenic stimulation/other source inflammation

be good if we could narrow treatments in to groups to predict what kinds of patients respond to what treatments?

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Absolutely, the conventional approach to treat only those symptoms that are clearly presenting, and only when the patient absolutely insists, with reference to GPs and non-ME/CFS oriented specialists, is inadequate. It would be helpful if treatment planning took a more holistic approach, at least in terms of identifying the most relevant targets for (further) investigation and treatment within a broad panel of options (such as that embodied in Part VII)

For instance some do well on glycine and some don't. Why is that? and can it be predicted somehow?

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I've yet to investigate the role of amino acids in any great detail but I imagine it would relate to the relative influence of associated deficiencies vs. other sources of systemic stress and diminished capacity to compensate for systemic stress, in the context of individual patient profiles

John one of the problems I have is with incremental exercise, the fluctuations of the illness I have means that I cannot plan to increase this however slowly

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Hi, thanks for your thoughts

I understand, it does seem ill advised to plan to increase exercise at all at this stage. For the record, incrimination can be both forward and reverse, as part of an adaptive activity protocol (this is a part of what is meant by smart activity)

I never do nothing on these days although I am tempted to - I know the importance of actually moving the body

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There you have it, I'm sure we all have this deep sense of the potential for 'stagnation'/loss of vitality through inertia, but it's rather difficult to see a way out when also faced with the slap in the face that is PEM on the flip side

What I am attempting, in adapting my protocol to fit the picture emerging from my research, is to help myself and others to some extent feel-, and to some extent plan-, our way delicately down the path between these two 'pits' to remission, and then recovery - by avoiding both too little and too much 'stimulation'

Depending on your OI profile, all forms of orthostatic exercise it seems should be approached with a certain, appropriate, degree of caution (even walking), however moving about whilst carefully managing orthostatic stress, and adhering to other important aspects of a carefully considered protocol, is advisable to those who can manage it

There is no progression in my ability to exercise however, and I remain as sick as ever

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Whilst some patients are able to go into remission through resting and careful pacing, unfortunately others are unable to and most of us have been sold the frankly rather hopeful idea that if we just rest up and take it easy we should recover in time

There is some value in this advice but it appears that there are other things that we can be doing, to maximise the efficacy of this rest (smart rest) and indeed to support the emergence of conditions in which the body may go into remission

I think people who are afraid to move have other issues that must be resolved first

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Agreed, for me it's about creating the right conditions for your body to be in a good position to enter remission, waiting for signs of this e.g. energy recovery, reduced need to spend so much time sleeping, signs of improving activity/orthostatic stress tolerance etc, and then taking tentative steps to support these themes of remission with smart activity